For those of you who come to check up on Daniel and see how he is doing, I'll give you the low down!
1) Medication: We are on our last week of the wean of Zonegran. We started him on this at the beginning of the year because his nasty "monster" of seizures came back with a vengeance. But Lonnie and I never thought it did too much to help control them. So since he is seizure free (everyone reading this knock on wood, throw salt over your shoulder, or do a little jig)the doctor has decided that we can wean the Zonegran and have Daniel back on a mono treatment plan of just the Vigabatrin. For this we are very happy. The less drugs we have to put into his body the better. Dr. Chugani even stated that in a few months if his EEG's stay clear, we can start weaning him off the Vigabatrin (this scares the crap out of me!)
2) Augmentative Communication: For a little boy that a certain "out of state" doctor told us at the beginning would basically be not amount to too much, he is doing frickin' remarkable! This child (yes we're tootin' Daniel's horn right now!) tracks and has better eye contact and eye communication then most adults! Last week, through Early Intervention a consultant for communication devices came to evaluate Daniel again. This is her second time, this time she brought a "static" device for communication for Daniel to use. We get to use it at home, at school, all over. She even commented on how far he has come from our goals that we set last year for him. Wanna know why??!?!
Because Daniel is spectacular, awesome, brilliant, and absolutely adorable too boot!
The child has drive, he wants to succeed, he wants to learn so many things. You can see that he absorbs everything around him. This kid has more smarts going on in there then I care to admit. He's just stuck in a body that doesn't want to work with him. But smarts wise.........We have a regular scholar! His Augmentative therapist seems to think that Daniel will be ready for the basic computerized communication device in about 3 months. I am so very excited for that day.
We will have on loan to use in January-ish a Tango, and then shortly after that a DynaVox.
3) Equipment: We are STILL waiting on the approval of Daniel's motorized wheelchair. Here is what it looks like. Can you believe it is taking so long!?! I also can't wait until he gets this. I still hear from people, WHY do you need a wheelchair for Daniel? You have his seating system, or he is starting to walk with the posture walker. Well here is why we need the wheelchair....
a) It will give Daniel the mobility and the freedom that a 2 year old should be able to have
b) It saves his mom and dad's backs
c) When he is in school and goes on field trips he doesn't have to have someone push him
d) Daniel wants FREEDOM, he doesn't want me constantly standing behind him ready to catch him.
e) Cause he wants to be a typical boy and run people over with a 150 lbs wheelchair, and probably try to figure out how to do wheelies!
4) Physical & Occupational Therapy: AWESOME. Doing a little bit of this and a lot of that! He is doing the treadmill, he walks the hallways in the building with his posture walker, and he is building his endurance. Some things he quickly learns and can do well, and others that just take us some time, gives us things to work on. But for the most part, he is successful with both therapies.
So that my dear friends, is the low down on my little guy (who isn't so little anymore!)